Title of study

    FTLD Cohort

    Acronym for cohort

    Name of Principal Investigator - Title

    Prof

    Name of Principal Investigator - First name

    Markus

    Name of Principal Investigator - Last name

    Otto

    Address of institution -Institution

    University of Ulm, Department of Neurology

    Address of institution - Street address

    Oberer Eselsberg 45

    Address of institution - City

    Ulm

    Address of institution - Postcode

    89081

    Country

    Germany

    Contact email
    Funding source

    Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?

    Alzheimer's disease and other dementias

    Q2a. In a single sentence what is the stated aim of the study? (Maximum 30 words)

    To observe appearance and progression of FTLD

    Q2b. What distinguishes this case-control study from other studies?

    Q3a. i) Number of publications that involve use of your cohort to date

    0

    Q3a. ii) Please give up to three examples of studies to date (PI, Institution, Title of Study)

    Q3b. If data on research outputs are already available please paste the publication list/other data or provide a link to where these data are publicly available

    Q3c. If no research has been done as yet, please explain in a few sentences what information (i.e. research findings) you expect will be gained from the case-control study

    Q4a. Study criteria: what is the age range of participants at recruitment? Age in years From:

    not specified

    Q4a. Study criteria: what is the age range of participants at recruitment? To:

    until death

    Q4b. Study criteria: what are the inclusion criteria?

    clinical phenotype consistend with a FTLD spectrum disorder

    Q4c. Study criteria: what are the exclusion criteria?

    Other neurodegenerative diseases

    Q5a. What is the size of the cohort (i.e. how many participants have enrolled)?

    1-1,000

    Q5b. What is the expected number of control participants?

    200-500

    Q6a. Please describe what measures are used to characterise participants

    Behavioural assessment battery; FBI; NPI; AES-C; GDS-15; CRS; E60F; ZBI-12; FTLD

    Q6b. Are there additional measures for participants with the clinical disorder?

    Q6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)?

    No

    If YES please specify

    Q7. What is the study design?

    Prospective cohort

    Q8. Are your cases matched by

    Q9a. Does your study includes a specialised subset of control participants?

    No

    Q9b. If your study includes a specialised subset of control participants please describe

    Q10a. Is data collection for this study

    Data collection ongoing

    Q10b. If data collection is ongoing, are there plans to continue the cohort study beyond the current projected end date?

    Yes - intend to apply for funding

    Q11. Are data collected

    Q12. Is there a system in place to enable re-contact with patients for future studies?

    Q13a. Please give information on data stored in a database (1)

    % Available

    Q13a. Please give information on data stored in a database (2)

    % Available

    Q13a. Please give information on data stored in a database (3)

    % Available

    Q13a. Please give information on data stored in a database (4)

    % Available

    Q13a. Please give information on data stored in a database (5)

    % Available

    Please specify language used

    % Available

    Q13b. Please give information on how data is held as individual records

    % Available

    Q14a. Are data available to other groups?

    Yes

    Q14b. If data is available to other groups what is the access policy/mechanisms for access?

    Q15. What data sharing policy is specified as a condition of use?

    Data made publicly available after a specified time point

    Q16a. Are tissues/samples/DNA available to other groups?

    Yes

    Q16b i) If yes, please describe below

    Q16b. ii) In what form are tissues/samples/DNA supplied?

    Q16b iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q14 above)?

    Q17. Is information on biological characteristics available to other groups?

    Yes, for all the cohort

Types: Case Control Studies
Member States: Germany
Diseases: Alzheimer's disease & other dementias
Years: 2016
Database Categories: N/A
Database Tags: N/A

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